Managing Lupus when Treatment Isn't Simple
What are your experiences managing lupus when treatment advice isn't clear or you don't have the necessary resources?
What helps you get through the day?
, well, I'm kinda in the same boat as you are. The rheumatologist I see now isn't very helpful. So, I'm looking for another one. But, I am being proactive about looking too. Good luck! Hi @reggiehall and @lisamarie42
When I was first diagnosed I went to see multiple rheumatologists and got various second opinions. I also researched so many things online. As patients if something isnt clear, dont be afraid to ask questions and demand the proper treatmemnt. - Geri (lupus.net, team member)
I look to tuning into my body and different lupus support groups for some direction. It's hard to find the right doctor for you so you have to really keep searching. I hope you found a doctor to help you out. ~Racquel~ lupus.net team member Treatment for me got tricky when the rheumatologist discovered I also have G6 hereditary blood disease which means I cannot take any of the malaria type sulfur drugs that are normally prescribed so now we are trying an anti-rejection drug
IGG infusions, antihistamines, steroid creams, tumeric, D3, Cymbalta and now the anti rejection drug ….and medical marijuana to help with insomnia tumeric is amazing I do shots of a combination of turmeric orange juice cayenne pepper and ginger that helps with so much. Thanks for sharing your treatments ~Racquel~ lupus.net team member
I have been on it two weeks now and having blood checked once a week
I had a good day last week where I recognized myself but it only lasted a day
Hopefully this will help with flares
Just got back from my IGG infusions at hematologist
I had been treated for auto
Immune this way for years and it also helps with lupus
I was just diagnosed with lupus a year ago
I am 70 and it forced me to retireGood days are always a plus. I hope it all continues to work for you. It’s hard being newly diagnosed and having to stop working. Gentle hugs to you. ~Racquel ~ lupus.net team member yes the infusions help a lot and also help to prevent infections
